Saturday, January 23, 2010

My MS Story Chapter 29- The Wheelchair Decision

“For me, the wheelchair symbolizes disability in a way a cane does not.”
- Annette Funicello (MS since 1987)

By the spring of 2008 I had become a proficient scooter pilot. I drove the “blue streak” almost everywhere I went, indoors and out. I always carried the forearm crutches on the back, but I found myself using them less and less as my leg strength continued to deteriorate.

The more I used the scooter, the more evident its limitations became to me.  The seat was not designed for continuous occupation. Because I needed to keep two hands on the tiller when driving, it was difficult to carry any items with me. The tiller itself prevented me from getting close to desks and tables. Being a three wheeled scooter, it was tippy on uneven surfaces.

Neither did the scooter climb curbs, lift me up to eye level with standing people, operate in four wheel drive mode, or negotiate stairs.

I can't remember exactly how it happened, whether it was over a period of minutes or days or weeks, but eventually I began to consider graduating to a wheelchair. That would be a huge step for me. Thus far I had progressed from a cane, to two forearm crutches, to the scooter. These assistive devices each implied a certain level of disability; a wheelchair represented the ultimate level of disability, well mobile disability anyway. I suppose continuous occupation of a hospital bed represents the ultimate level of immobile disability.

I saw my first iBOT on a television commercial in the middle of the night. I perused their website, and I was instantly blown away. If I had to be in a wheelchair, this baby might make it a little more palatable. I signed up for a demo, and received a phone call a few days later from Independence Technology to schedule a home test drive.

On April 10, 2008 Kate showed up at my house. She unloaded the demonstration iBOT from her van and brought it inside. I anxiously transferred from my scooter to the iBOT. Kate pushed a flurry of buttons to calibrate the iBOT for my weight, and then we were off and running. We tried out both the standard mode and balance mode inside. Since I didn't have any steps in my house we moved to the back deck to play with the stair climbing mode.

In Maine, there’s a good reason that we refer to the month of April as mud season. My lawn was still soft from the recently melted snow. Nevertheless, we put the iBOT in four-wheel-drive mode and slogged all around the yard. I was at once impressed and horrified as I drove the iBOT over my lawn, leaving two parallel ruts in my wake (they disappeared after a few weeks).

Here’s my journal entry from that day:
“Had in home test drive of iBOT 4000. Must have it.”
That brief entry says it all. I was on a mission.

The next step in the process required me to spend a few hours at a rehabilitation hospital in New Hampshire. It was a two-way interview. I would spend an afternoon further evaluating the iBOT (this was enjoyable, but unnecessary). At the same time, an independent consultant would run me through the ropes to make sure that I was physically, mentally, and otherwise capable of operating this complex device.

I drove to the rehab hospital and met up with Joanne. She helped me learn all the features of the iBOT, spending a little more time than Kate had with each mode. Joanne scrutinized my every move and asked me a million questions about my condition, and about how I intended to use the iBOT.

I was, however, beset by a lingering doubt. Did I really need such a robust assistive device? I felt that all of my adaptations to date had been justified, and timely. But was I jumping the gun on this move? I mean, I could still walk short distances using my two forearm crutches. It was getting harder and harder all the time, but I still could. Was this the right time in my disease progression for a power wheelchair?

Near the end of our evaluation I shared this concern with Joanne. She agreed that I might not be an ideal candidate for this chair, but for a completely different reason. She was somewhat hesitant to recommend me for the iBOT, not because I wasn't ready for it, but because she worried that I might not be able to operate it for very many years, due to my worsening MS.

I was taken aback. “What you mean?” I asked, naively. “What could go wrong with me that would prevent me from being able to operate this wheelchair?”

Note to self: be careful what questions you ask, as you may not like the answers.

Joanne hesitated, and then said, "Well, since you asked…”

She methodically spelled out the declines in function that I might experience in the coming years (some of which have already come true). Suffice it to say this was a bit of a wake-up call for me. I never again worried whether I was ready for a power wheelchair. Today, like Joanne, I only worry about how many more years I can continue to enjoy the iBOT.

Joanne also pointed out that some power wheelchairs are designed to address the issues of more severely disabled people. The iBOT is not one of those chairs.

“OK. Thanks. But none of that bothers me,” I said. “I've got to have one of these chairs. What's the next step?”

I had made the wheelchair decision.


For more information on the iBOT wheelchair, please see my three previous posts:

This is Not My Mother’s Wheelchair (Part 1)
This is Not My Mother’s Wheelchair (Part 2)
What Would Mitch Do? or WWMD?

Also, to see my iBOT in action watch these two videos:

Taking the iBOT to the Beach
Taking the iBOT to Two Lights State Park

*note that the iBOT is no longer available for sale
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  1. Able bodied people don't realize how big a step it is to make the transition to a wheelchair. It's such a big decision. I still struggle with facing that next step. I know it is coming along soon. My doctor is encouraging it now. I am holding out as long as possible. A few more falls like those I've had recently will make the decision for me. I am still fighting for my independence. Your chair sounds like a dream cadillac version. I hate to think what kind Medicare will provide for me.

  2. Rae,

    I don't know what your personal mode of mobility is now, but most likely a wheelchair will in some ways increase your independence, in that you'll be able to get to accessible locations that were difficult with cane, crutches, or scooter.

    But I understand what you are saying. People who are handicapped enough to need a wheelchair do live in a world that will always be, to a certain extent, inaccessible.

    Then there's the issue of getting the heavy wheelchair around...those vans are very expensive.

  3. Your last line noting that the iBOT is no longer available made me wonder why.

    Glad you were able to get one while they still made them.

    Watched the video for Two Lights State Park. Looked like a perfect day.

  4. Darren,

    The explanation for why the iBOT is no longer available can be found here:

  5. The iBOT is not available because the folks in Washington who run CMS as well as able bodied members of Congress have no idea what it is like to be disabled and they judge the cost of this technology too expensive and its seated as tall as a standing adult or climbing stairs a mere luxury. I am able bodied, a founder of a non-profit that provided iBOTS to wounded disabled post 9/11 veterans, and we can't get them either because our government thinks too little of the soliders they send off to war.

    Gary Lawson, America's Huey 091 Foundation

  6. Also, If anyone wishes to sell an iBOT, we have bought one used so far and yet we have lots of amputee and paralysed veterans who we can provide it to. I can be contacted if anyone wishes via our website,
    thank you,

  7. Well said Gary!

    What can we do about it?